update on being home

Well its been a few days since my last post.  I have been enjoying being away from electronics and just spending time with my husband and kids.  we've had a week full of doctor appointments, home nurses and trying to figure out our new normal.   Our pediatrician had not received any information from the mayo clinic so when we came to do a base line check up with him, he had no idea Capri even had surgery.  He was excited to see that she was doing so well though willing to help us with the obstacles she still has to overcome. 

we've had home health nurses occupational therapists, physical therapists, home health delivery people and pretty much any kind of healthcare personal you can think of stop by this week to set up a plan to get her back on track. 

Capri failed her 2nd swallow study so we are still mostly feeding from her tube but letting her try a bottle here and there.  She still has no interest in it which does make me a little anxious for our future.   I think a gtube surgery is probably in our near future but I really am trying to avoid another surgery if at all possible.

Capri decided to pull her feeding tube out on Wednesday while I was putting A and B down for naps.  I called home health to see if anyone could come help me place it but they were all tied up until later that night.  I learned how to do it in December so decided I could just do it by myself.  Well miss C was not about to hold still while I shoved a tube down her nose so I had Ashton hold her head while I tried to place it.  Yes I had my 5 year old be my fill in nurse, don't judge.  I kept hitting the back of her throat and psyched myself out that I was going to stick it into her lungs so  in the end we made an ER trip and waited 3 hours for them to spend 30 seconds to place the tube. This is another reason why putting a gtube in is probably going to be necessary. 

Besides  the medical stuff we have been loving just being able to lay in bed and watch cartoons, making dinner together every night  and having amazing neighbors/friends stop by to check in on us.  It is a wonderful feeling to be home.  Something I have always taken for granted but now I catch myself watching the kids play together realizing just how lucky we are to all be under one roof

 Making kale chips which are surprisingly really good.  A and B loved them.

 Got out the high chair so sis could sit with us at dinner

 

 

 

 

 

 

Enjoying some sweet potatoes. 

luckily her aversion towards food is only when its in a bottle

reunited

I walked out side to throw away the trash as i saw my dads car turn down our street.  I ran to meet them and saw A banging on his window waving frantically.  It has been way to long.  Being away from your children for a month in a half is brutal.  Everyone is home now.  Our family is whole again.

I asked B what she wanted to do today and her response was: well probably just hug you and kiss you a lot.  Fine by me sis!  We played most of the afternoon and visited with my parents and Mikes mother.  Capris nurse came by to change the dressing on her PICC line. A. told him that he was a doctor because only girls were nurses and boys were doctors.  Fail.. we need to talk about this gender equality thing litttle boy.

Capri did great all day. Her oxygen was in the high 90s and she spent most of the day sleeping.  Having the kids run around screaming playing and even fighting is such a calm feeling.  Everything is going to be okay now.  We are home

pulse ox

Last night was quite the night!  We couldnt get Capris oxygen to stay in the 90s despite having her be on 1 1/2 liters of oxygen.  Both our home health nurse and the cfardiologist where concerned that we left the hospital to early and she maybe wasnt ready.  The on call dr called me 4 times throughout the night to check her oxygen and i woke up probably every 15 minutes to make sure she was okay.

This morning as i was playing with her and getting her dressed for the day I noticed her oxygen was at 105.  How is that possible?  After looking more closely i realized that we had been reading the machine wrong this whole time.  We were looking at her heart rate vs her oxygen.  She was sating at 100 with no oxygen on.  I think my brain has finally decided its had enough and left for good.

We spent the rest of the day playing. I went grocery shopping which was a little surreal.  I just kept thinking to myself.. are we really home?  Do we really get to stay home?  I can cook meals and not have my regular "grilled cheese and french fries lunch"  It feels so good to be home i dont even know how to describe it.

A winter storm hit wyoming so A and B where not able to come home today.  Hopefully the roads will open up tommorow and we will be able to have our family together again.

coming home

When I got to the hospital today, much to my surprise Capris doctors informed me that they were going to discharge her today! She went into the OR to get a picc line placed so we could continue to give her IV meds for the next 2 weeks and then got ready to go home.

We left the hospital around 8 to meet the home health nurse at our house by 9.  When we got here she was already here but they hadn't delivered capris medicine.  Around 1030 he finally arrived and brought a box filled with IV flushes, heprin to keep the line open but forgot the actual antibiotic.  it is now midnight hopefully he will be here soon so she can get her meds and we can settle in for the night.

She is also struggling to keep her oxygen up which is strange because in the hospital she stayed in the mid to high 90s with nothing to help her.  Right now she is on 1 liter and sating at 85,  If we cant get her to back up she will need to be re admitted.

It is great to all be home and will be even better when A and B arrived tomorrow.  I asked B what she wanted to do when she gets home and she told me "well probably just hug and kiss you a lot mom"  I miss my little munchkins so much I cant wait till they are back in my arms!

Heres hoping for an uneventful night and no more hospital stays~

home

The last two days have been such a whirlwind ive barely been able to catch my breath.  We found out yesterday evening that insurance had approved the lifeflight and we would be leaving in the morning.  I spent the evening at Amanda and Chris's hotel visiting with them and Jessica and Aaron. Realizing that this is probably the last time we will all be together but not wanting to admit it.  We delayed our goodbyes and said they could wait until the morning.  I tossed and turned all night so excited that it was finally time to come home. 
I got to the hospital this morning around 730 so I had time to see all of the doctors and nurses and say all of my goodbyes.  All morning everyone from surgeons to the janitor lady came in to give us a hug and wish us good luck.  All of these amazing people, my family when I was alone.  I am going to miss them all so much!

We loaded capri into a transport van and then onto the lifeflight.  The flight was so different from our one out to Minnesota.  Capri slept the whole way and did fine on room air.  I took a nap and the lifeflight nurse read a newspaper.  it was a no stress relaxed trip.  Once we got to primary childrens and got the doctors and nurses  re acquainted with Capri we noticed her sats had dropped into the 80s.  I knew being off oxygen was going to be short lived here but I was hoping it would last more then a few minutes.    She drifted in and out of sleep most of the afternoon and woke up just long enough to give her daddy a big grin.  We are back home now but will head up to the hospital first thing in the morning.  It feels so great to be in my own bed with my husband laying next  to me.  Now we just need A B and C back to make our family complete

When will we catch a break

Today has been a hard day.  Last night Capri spiked a fever as i was leaving.  This morning i found out she has 2 different kinds of bacteria growing in her blood stream.  We took the picc line out and after 5 different attempts from 1 IV specialist and 2 doctors we finally got a new line in capris foot.  Because of this bateria she will need to be on IV antiobiotics for 2 weeks.  If insurance denys our second request we made today for a life flight home we will be stuck in minnesota till mid March.  I am beginning to feel like we are never going to come home.  Everyday it gets harder to be away from my husband and my other 2 kids.  Im pretty sure they think grandma and grandpa are their new parents.  I am trying to be positive and i know we are in the best place to have a sick baby but come on!  2 blood clots 2 lungs collapses 2 bacterial blood infections a chylus leak 2 major heart surgeries 3 failed attempts at extubation... when is it our turn to catch a break?  Baby girl i know you like the attention but its okay to let the other kids get some of the bugs once in awhile.. just stay healthy~

Hopefully we will hear from insurance tomorrow and at least have a plan on moving forward.  Something to look forward too.  On a  positive note our friend Grant was discharged today.  That little boy is a champ showing all of us up.  Nathan is still stable and will hopefully attempt extubation tomorrow.  He has a long road ahead of him as well.  If nothing else we will have company in our misery :)

Art of Deduction

I am sorry to say, but for those of you who came here looking for more amazing writings from Mrs. Ware, you will have to wait until tonight. I am informed that people are actually inquiring about my ware bouts and what it is like from my end of the spectrum. Well, where oh where do I start.  Since my last update on 1/30/14, things have not really "changed", but rather altered a bit. Now that Capri seems to be doing much better in her recoveries, my nights filled with worry and wonder have now been replaced with promise and excitement. The amount that I miss my family has grown more colossal, and I am ready for them to come home, Not today, but yesterday.


I have spent the last few weeks still trying to find ways to fill my time. I have been looking for a project that will really pass the time, and challenge my mind.  While doing laundry, I looked around my unfinished basement remembering where I lift off 2 winters ago and planning out what still needed to be done. In no time at all I managed to find some Lowes gift cards I had and I just could not let funds remain on them any longer. Off to Lowes I go to buy the supplies to finish a basement. Does anyone here know just how many 2x4x96" boards can fit inside of a Saab Sports Sedan? You would imagine the looks I got in the parking lot when people saw me wheeling out a cart full of wood and popping the trunk to a mid-size sedan. I can't prove it, but I am convinced people were "pretending to talk on their phones, and looking for something in their vehicle" just so they could stick around to see if what they were seeing was actually taking place. As people watched with disbelief, I think around the 6th board, some of the on-lookers started a betting system on how many boards would fit. I think there were 4-1 odds betting on which window would get shattered first. 5-1 odds on total amount of boards I could fit in, which had a 6-1 odds bonus if they guessed correctly whether the trunk could close or not for my departure. I managed to fit 34 2x4x96" boards in my car without so much as rolling a window down, and the trunk closed without the assistance of a rope. I think 98% of the people watching this spectacle still don't believe what they witnessed. 


I finally get home and after I am finished unloading my cargo I think to myself, let the magic begin. It is always fun to have a project where I get to cut, break, measure, use a hammer to swing it violently then repeat. After much time of basement work, a little cutting here, hammering there, and running out of boards,  I stop and step back for a good look at my handy work and at that time my mind has been relieved of fear and lonesome, and replaced it with deep concern for my basement building abilities. How did that get up there, why does that board not fit, why are there so many screws left over, what is that dripping sound, are just a few thoughts processing through my mind. Not to worry, I did plan ahead and picked up a roll of duct tape while I was at Lowes for situations such as these, that's this weeks project.  By the way, does anyone know someone that can clean up 4-5" of standing water in a basement?   

 But in all seriousness, it has been a great way to pass the time and just not think about anything except measurements and lumber. It has been time well spent over the last couple weeks I am excited to keep working on it and my other projects.


I cannot post today without saying thank you to all those who have brought me dinner over the last week. It has been great to meet all of you, and it has been great to eat real food again. It could not have come at better timing, when I was provided my first meal, just the night before I had ran out of hotdogs, and was down to my last cup-o-noodles. Speaking of that, did you now that's not real meat in those things? I have learned the craziest things the last few weeks. But honestly, thank you, they are so amazing and the food is amazing! The pot roasts, chili, chicken tortilla soup, pizza, tacos, chicken and pork burritos that would give Café Rio a run for their money, and some delicious chicken turnovers that were perfectly prepared. Kendra might have competition with her chicken turnovers. I must warn you, I judge all my meals like Chef Ramsey on master chef. But don't let that intimidate you, my baseline for taste and creativity is somewhere between a cheese tortilla rollup, and a Jell-O Pudding cup.  Under any other circumstances, I could really get used to this meal delivery service. Now onto desserts, I had some Crepes last night that were amazing. I was given some churro cookies that were full of flavor and awesome, a caramel chocolate whip cake/pie that was great, and some glazed donuts that really hit the spot, plain glazed is my favorite. As you can tell from above, I have been eating well while Kendra has been gone.... Honey I was just thinking, if you wanted to stay back there a day or two longer to see all that Minnesota has to offer, that is fine... You deserve it!


I have started watching a new show called "Elementary", and it is very good. A show about Sherlock Holmes and Ms. Watson. Another personal recommendation from myself for some good entertainment.  Being home alone the last 3 weeks, on top of everything else, I have actually learned quite a bit. the next time I post, I will list some of them so that other husbands can print them out when their wife goes out of town and use it as a "survival guide".


Now back to your regularly scheduled author.